As parents of young kids watch the 20 somethings march in Zuccoti Park with placards describing college debt and unemployment, they start hyperventilating a little. "What do I need to do to make sure that my kids don't end up in that same spot", they wonder. "What should they major in? Should I steer them towards career path in medicine or let them pursue their passion in the arts? Should I lose sleep about the B in Algebra?"
The world seems less safe for kids who aren't perfect. For the kid who forgets his math homework on the kitchen table. For the kid who is too distracted by girls to get an A on his biology test. For the kid who isn't quite reading at the same level as her classmates.
As a parent of a kid with a disability, these stresses are amped up. Is the modern world a good place for imperfect kids?
Some people, like Tyler Cowen, have argued that the modern world is the best possible time period in history for people with Aspergers' Syndrome. Technology enables them to use their strengths to the best ability. The modern world rewards the asperger-y mind.
Others have said that we have a much better understanding of people with differences, and can treat everything from dyslexia to autism with better therapies.
But maybe the modern world isn't so great for people with differences. The extended family is spread out and too busy to help. Parents can't maintain a 9 to 5 lifestyle with all the demands that come with disabilities. (Already, I've gotten three phone calls from Ian's school today, because another disabled kid hit him hard enough to go to the nurse's office.) At least one parent has to let go of modern notions of success to care for the child. Carework, in general, is less respected by society. There's no community life that can make room for an individual who can't work a traditional job.
The world needs to make room for imperfect people.
(first draft. typing really fast. running out the door. excuse typos.)
Apt. 11d 
But maybe the modern world isn’t so great for people with differences. The extended family is spread out and too busy to help.
Put me in the Tyler Cowen camp that we are living in the best possible time for most things. Even the counterfactuals in which you are living on the farm milking the goats assume that you were of the class that was rich enough to own a farm and have goats to raise. Imaging a historical time in which raising a disabled child was easier, I think, is a “failure of imagination” for not considering the full range of possible life options that existed in the past.
What if you were an itinerant farmhand in 1930 with a disabled child instead of a landowner? Or a Jewish mom in 1880 in a tenement apartment with an autistic kid? Or even worse, what if you weren’t white? The fact that one can imagine a narrow situation that was more common in the past doesn’t mean that, overall, the situation today is not 1000% better.
My low-IQ, disabled little sister has her own apartment today, lives independently, and pays her rent with her SSDI checks that didn’t exist before the 1950s. She “presents” as a minority of some sort when you meet her (even though she self-identifies as “white,” that wouldn’t be your first guess), but has never had a job explicitly closed to her for appearance. And she’s perfect for those crappy, dead-end, minimum wage jobs that you would be horrified if any of your non-disabled relatives got stuck in, that are now proliferating (child care aide, fast food worker, broom pusher).
It certainly puts a big burden on my parents (and, less directly and less often, me), but much less so than if the huge number of services we have taken advantage of were not available.
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I wonder if the outrage of the underemployed, overindebted isn’t more because they believed (at least while they were in college racking up that debt) that they were special and chosen and destined for success.
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I’d have to say that our kids ARE perfect, they just aren’t AVERAGE.
Both of my younger kids (one with autism, the other with processing disorders) are active in supporting the Occupy Wall St / Occupy America movement.
One of the interesting myths about the movement is that it’s made up of overindulged college students and new grads. I’ve been following the movement in different locals, and while yeah, here in Albuquerque it seems to be a lot of kids, in other areas it’s made up of a pretty broad cross section.
And while I agree, our kids aren’t in institutions anymore, and they do have it better, I’m not sure that it’s the way it SHOULD be, or that it’s FAIR. I’ve seen too many mentally ill homeless shot by police, too many people who can’t take care of themselves out on the street (including my own son, who is too violent at times to be in my home, but too rational at others to be in an institution other than prison).
Many of our kids are capable of taking on some sort of work, but in a society where people with Masters Degrees are behind the cash register at the corner drug store, the competition for even lower paying jobs is just too tough.
Lets face it: We live in a nation where there are less jobs than people who need jobs, and someone is going to be left out. I’m afraid we know who some of those people are going to be: our kids.
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My child started out disabled enough that there’s almost no way he would have been able to hold a job in ANY economy without the major intervention he got from age of 3.
Now he’s in college – and not needing any extra help so far, but if he does, it’s everywhere he looks. Everywhere! A counselor checks in with him, there are tutorials and study sessions and 1:1 tutors if he needs them, support groups for spectrum kids, counseling, etc etc.
He’s never been teased to the point that it affected his enjoyment of school. He’s never been pushed or obviously excluded. His new roommates are tolerant of his humming and oddities and help him with his essays (he helps them with math). I shudder when I think of how people of my own generation would have reacted…
I worry about the same job issues Kate does, but on balance, I’d say best time ever.
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I think modernity works against disability. And to truly make room for the disabled we have to reject utilitarian notions of productivity as measures of human worth…
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I agree with Ragtime that there’s no question that if you don’t get to choose your spot, it’s better to be disabled/an outsider/a woman/ . . . now than in any other time in history.
I think, though, that one could ask this question differently and ask whether if you could choose your place (for example, the farm with the cows in Wisconsin in the 1890’s) you’d be better off than the spot you would have now (which one? born into a socioeconomically well off and educated family in the NE?).
Also, I’d like to point out that there are no perfect children. Even children who remember their homework, don’t get distracted, and like to study for tests are imperfect (and, the perception of perfection brings its own challenges).
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I promise to write a happy, fun post next week. I don’t know why I went down this path this week. Things are actually fabulous around here.
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I agree with this. There is way too much panicked competition now.
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“I agree with Ragtime that there’s no question that if you don’t get to choose your spot, it’s better to be disabled/an outsider/a woman/ . . . now than in any other time in history.”
As long as you haven’t been prenatally culled from the herd, of course.
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“Things are actually fabulous around here. ”
Good to hear. I did worry just a little bit.
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Go take a gander at the Harvard Study of Adult Development if you want to get some perspective on this problem. (Good Atlantic review of the study, http://www.theatlantic.com/magazine/archive/2009/06/what-makes-us-happy/7439/)
Many of the utterly perfect people in that study have had searingly imperfect lives: alcoholism, self-destruction, more nagging forms of unhappiness and dissatisfaction, poverty, you name it.
The kids who are being pushed to perfection now are in my view very likely courting some of the same disasters. Nor would I buy the narrative that the people at OWS are somehow the kids who didn’t make it and the kids who did make it are all inside on the trading floor. (Nor would I assume that the kids inside are the winners: see again that study.)
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Some peoples are perfect but some peoples are not perfect so it is not right that we call them disable. They able in other things. We can not understand their abilities because we see only their disability. But this type of persons progress in others field.
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Nor would I buy the narrative that the people at OWS are somehow the kids who didn’t make it…
I stood outside the newly created Occupy Pittsburgh thing for a bit. They looked like graduate students except with better grooming.
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Just as the most apt sound bite for OWS is “Banks unfairly socialize risk while privatizing profits” my favorite sound bite for today’s parenting is “Don’t parent the future’s adult, parent today’s child.” Apropos of this thought, only my sympathies exceed my admiration for the parent who wrote the column in yesterday’s NYTimes, a mother of a child with fatal Tay-Sachs syndrome. One of the best parenting advice columns they have ever run.
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learner: the Tay-Sachs column was heart-rending. I read it in awe and terror.
I think today’s Western modern society, although imperfect, offers much to those who are dis/other-abled. As I observe life in the post-second world, I can only speculate the plight of the disabled, who must rely enormously on family members. The social safety net here is better than it was in the mid-1990s, which is only to say that it is slightly less non-existant.
That said, the modern world might blind us to other mechanisms to adjust to disabilities. This American Life had an entrancing story of an autistic boy who found solace with horses and the shamen in Mongolia. Definitely a 3rd world/non-modern solution.
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I’m crying over the Tay-Sachs column. Makes you just want to keep your kids in your arms all day long.
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Wow, on point spam. I presume this is done by hiring actual people to post the spam? Or have reading comprehension technologies gotten good enough to pass the Turing test — except for the link?
I’ve been doing some soul searching thinking abut the deeper point here, which is how much are children (and the parents of those children) willing to tolerate (in the sense of tolerance, and not in the sense of “bear” as in bear a burden) in order to build community? There’s a huge range, from a child who can’t seem to stop hitting, to a classroom that needs to be “evacuated” so that a child won’t hit anybody, to a child who has the occasional tantrum, to a child who gets distracted while he’s playing goalie, to the child who falls out of his chair in class, to the child who is a smart alec and disturbs the classroom when other eager beavers want to learn more about fungus (or lichen or whatever).
I do think that there’s something about upper end parenting these days that is taking the idea of finding the best environment for your child past the teachers, and the school to the peers in a way that’s more dramatic than the expectations in the past. When this means making sure your kid isn’t being actively bullied, it seems all good. But when it means making sure your kid plays on soccer teams with only people who are just as excited and committed as they are (and, then, extends that to school, and orchestra, and drama, and every other activity), you disrupt any form of community.
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“This American Life had an entrancing story of an autistic boy who found solace with horses and the shamen in Mongolia. Definitely a 3rd world/non-modern solution.”
There’s a documentary on that story called “The Horse Boy.” I’m the last person to warm up to shamanistic New Age stuff, but I honestly couldn’t stop watching–and these days, I have a very hard time getting through movies. It may be that it is one of those examples of how almost any intervention or time on task will yield results. The kid spent weeks (?) constantly with his parents, with a camera crew, with horses, with lots of Mongolians, in a totally new environment. I confess, my oldest goes to riding therapy too. I wonder about the efficacy of it, but she likes it and it’s very good for posture and building up the muscles involved in sitting up straight, and there’s a lot of interaction with the trainers and the horse. It’s hard to figure out whether it makes sense for the time and money involved, but as I said, she likes it.
A lot of autistic people get on much better with animals than with people and have a much greater tolerance for solitude than average people. Those features (as well as any unusual facility for fixing and contriving and solving spatial problems) could make farm or country life a good fit, although admittedly not a good training ground for entry into standard suburban or urban life.
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“There’s a huge range, from a child who can’t seem to stop hitting, to a classroom that needs to be “evacuated” so that a child won’t hit anybody, to a child who has the occasional tantrum, to a child who gets distracted while he’s playing goalie, to the child who falls out of his chair in class, to the child who is a smart alec and disturbs the classroom when other eager beavers want to learn more about fungus (or lichen or whatever).”
I was eavesdropping yesterday in Panera’s and overheard a conversation between a woman and a companion. The woman is pulling her kindergartener out of school for the year, having discovered that the teacher is spending 1/3 of her time just keeping this one child in line. The mom was a good sport about that. However, she was really ticked off about the fact that her kid had been given a full-day of in-school suspension (to be served Monday in the school secretary’s office) for bad behavior on Friday. I couldn’t make out the sequence of events, but my feeling was that the child was not going to be returning to school for that Monday.
Given that kindergarten is not required, this particular episode falls in a gray area, but I wonder what the school would have done with a 1st grader.
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As long as you haven’t been prenatally culled from the herd, of course.
Who is the “you” here, and who is harmed? No one, as far as I can tell, unless you think someone is harmed every time a woman miss-carries, or even doesn’t have sex when ovulating.
One the general topic, though, some useful comparison comes from looking at the life expectancy of people with various sorts of disabilities now and even 20 or 30 years ago. It’s _much_ higher now, partly because of advances in medicine, but much of it, I think, because of care being more actively given, rather than allowing (often institutionalized) people get sick and die.
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“They looked like graduate students except with better grooming.”
That’s what I look like, and I have a full-time job. IJS.
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I was assuming everybody bought real clothes after they left grad school.
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“I do think that there’s something about upper end parenting these days that is taking the idea of finding the best environment for your child past the teachers, and the school to the peers in a way that’s more dramatic than the expectations in the past. When this means making sure your kid isn’t being actively bullied, it seems all good. But when it means making sure your kid plays on soccer teams with only people who are just as excited and committed as they are (and, then, extends that to school, and orchestra, and drama, and every other activity), you disrupt any form of community.”
This is an interesting point, bj, and once I hadn’t thought of. I constantly struggle with the balance between keeping my special snowflake interested and not-bored (which may mean keeping with kids who are motivated and excited about the things he is) and teaching him how to handle boredom, which is not his strong point. I sometimes feel I shouldn’t be pushing for him to learn how to be bored. That sounds weird. But maybe it’s the AS thing. It’s part of the social skill set he needs. When I was bored as a kid, I amused myself. When he’s bored, he bounces off the walls. And that’s disruptive to community.
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I agree with Ragtime . . . I think, though, that one could ask this question differently and ask whether if you could choose your place (for example, the farm with the cows in Wisconsin in the 1890’s)”
Not to point out the obvious, but if we get to choose our place, there are still small farms in Wisconsin (and New Jersey! — the Garden State!). People generally left for the cities (and they are still doing today in places like China) because, overall, being on a farm sucks. No neighbors. Nothing to do. Lots of hard work. Poor financial rewards. Stinky animals.
Farmhand might end up being the perfect job for any particular autistic kid, but if my child had a significant learning disability, my first thought would be to get the heck off the rural Wisconsin farm and closer to where the language specialists live.
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I found the tay sachs column beautiful and heart-rending. And simultaneously am close to 100% certain that I would have an abortion if I knew I were carrying a fetus with tay sachs. (Didn’t get tested when pregnant, though, as my husband is not of Ashkenazi descent and thus the odds were very low.)
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As long as you haven’t been prenatally culled from the herd, of course.
Who is the “you” here, and who is harmed?
Matt — We try to live longer, happier, less confrontational lives by ignoring Amy in her trollish moods.
That said, as a person with a late 1973 birthday(and, therefore, among the first newborns eligible to be legally aborted in all 50 states for the entirety of my stay in utero), I still like my chances being being conceived now than at any time in the past, due to the risks of miscarriage, infant death, and (sometimes illegal) abortion in 1890s Wisconsin.
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It’s interesting to compare this thread with the usual 1950s/1960s Putnamesque nostalgia that usually prevails. Can it be possible that the US middle class is going down the tubes, but that simultaneously
it’s the best time ever to be a disabled person in the US? I’m having trouble squaring those two ideas. Or maybe it’s the best time right now, but in 10-20 years, we should expect substantial degradation in quality of life for disabled Americans, as for nearly everybody else.
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Speaking of trolls, my husband is enjoying a movie called Trollhunter, which is a sort of blend of Blair Witch Project and Men in Black, but in Norway with trolls. I’m not officially watching it, but it looks fun and the scenery and language are nice.
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As long as you haven’t been prenatally culled from the herd, of course.
Who is the “you” here, and who is harmed?
I don’t care much about abortion, but I do care about intellectual and moral honesty. Go find some disability rights activists and explain to them that “no one” would have been harmed if they had been aborted rather than born as the defective humans they are, and they will tell you who “you” is.
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Me too Elizabeth. I was wary of reading the Tay-Sachs article because of the strength of my belief on that question, but I think the article was moving, especially for those of us with typical children.
With children who do have a future, I certainly don’t choose to ignore the future, but it is worth remembering the present as well. And, as I said to someone who was telling me of “hot-housing” a child for a certain result — the reward for doing something really well is usually to get to do more of it, something that really doesn’t have much point, if you didn’t like doing it in the first place.
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It’s true, y81- I think that the disability rights arguments against abortion in these sorts of cases are deeply confused. There is sometimes an argument that’s plausible (though I’m skeptical of it, too) in the area, but insofar as the claim is that there is a person, in the moral sense of the term, who is harmed by abortion, the claim is just completely wrong. As for the way you put it, if I had been aborted, I would not have existed, and so I would not have been harmed. That’s not hard to understand, is it? It’s no different from the fact that if my mother had had a headache the night I was conceived, I would not have existed, or how, if my mother would have had a miscarriage, I would not have existed, and so would not have been harmed by it.
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Matt, you are the one who is confused. Once you say, as a definitional matter, that a person isn’t a person until he or she is born, then obviously a fetus can’t be harmed. That’s not a “fact,” as you term it, it’s just a definition.
Of course, if we were talking about animal cruelty laws, we wouldn’t consider “moral personhood” an essential element of “capacity to be harmed,” so your argument is not a very good one.
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(not touching the abortion argument right now, but feel free to fight away.)
I feel like I read a different article from the rest of you. My reaction wasn’t thank god that isn’t me or abortion ethics. The article wasn’t even about Tay sachs for me. It was about caring for someone with all your being and learning to let go of superficial goals like achievent and a balanced diet. Even you haven’t experienced that with kids of your own, we’ve all been there with sick
relatives.
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“It was about caring for someone with all your being and learning to let go of superficial goals . . . .”
Oh, I agree that the article was the extreme version of “loving the kid on the couch” (a phrase in extreme parenting circles to remind people to raise/support/help the child they have and not some mythical version of perfection).
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“As for the way you put it, if I had been aborted, I would not have existed, and so I would not have been harmed.”
No, there was existence, it was just shorter than usual. It’s a pretty distinct situation from never having been conceived.
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As you know, though, those of us who have the luxury of children who do have futures have to make decisions with the future in mind (as well as the present). And that balance might be even more critical for children whose lives will take vastly different trajectories if we (get them glasses, speech therapy, eye surgery, . . . .).
While it is meaningful and inspirational to listen to what people do when they know they only a few days/weeks/months to live, it can’t actually guide our decision making on a day to day basis (for ourselves, or our children). I can remember to enjoy each day, but living each as though it were my last would not result in the good future I’m actually fortunate to have.
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To me, the issue of disability rights is totally separate from abortion rights, and I’m not really comfortable trying to conflate them, as in a “disability rights approach to abortion.” Basically, women have a right to abortion. I’ll never be comfortable in a world that assumes other people/governments/our corporate overlords have the right to force a woman to bear a child against her will.
But once abortion is accepted as the basic right it is, *then* the disability rights issue can be discussed. I may think you have a perfect right to have an abortion, but I don’t have to like your reasons, just like I may feel you have the freedom of speech, but I don’t have to like what you say. I reserve the right to consider aborting a disabled fetus morally wrong, just as I would dislike other reasons for abortion. But the nice thing about rights is that people don’t have to agree 100% with how you exercise those rights.
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A modest suggestion. Empathy is about learning to not have the first response to someone else’s circumstances be, “Well, here’s what I would do. (and they should have done).”
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Y81- it’s clear that you don’t know any of the relevant literature on abortion. Given that, there’s no point discussing this with you on a blog. But, you’ll note that I said nothing about being born, and at the point where most abortions are performed, all the evidence is that the brain isn’t developed enough for a fetus to even feel pain, so even the animal cruelty issue doesn’t come in. As for Amy’s remark, if “existence” is what matters, we should morn the huge natural slaughter that happens every day, given that about 1/3 or so of fertilized eggs end up in spontaneous abortions. But it takes a theological perspective to even get to that point. Whatever else one may think, the idea that a fetus is a “person” in any interesting sense is pretty implausible.
I might not be in deep disagreement with Wendy. I do think that, on any sensible theory, to have an abortion isn’t to harm anyone, as there is no one to be harmed. But, one can do something that is itself morally neutral (or even praise-worthy) for bad reasons, and that’s worth thinking about. How that applies to particular cases is sometimes easy, sometimes hard.
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It’s common among soi-disant intellectuals, when they don’t have a good response, to pronounce themselves smarter and better read than anyone else in the room, and leave. It didn’t impress me during my years in New Haven and Berkeley, and it doesn’t impress me now.
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Going back to Amy P’s question from 3:22, I think it’s probably one of the best times in history to be born with a disability if you have resources (mostly thinking financial, but having parents w/ social capital, willingness to devote their lives to improving yours clearly matters too.) With budget cuts, we’re seeing people losing a lot of the supports that have made it work. If you’re not reading Smart Ass Cripple, you probably should be
http://smartasscripple.blogspot.com/
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The abortion debate is rather a red herring. Through illness or injury, many people become disabled. Many conditions may be genetic, but there’s no prenatal test to detect them–or it would be too expensive to test every woman for every known condition.
Some conditions would have been disabling in the past, but can be controlled with medication or diet changes–PKU or galactosemia, for example.
On the other hand, modern life can weaken family bonds, and marital bonds. It’s possible for one parent to be left essentially alone with a disabled child. Some parents have not been able to cope with the burden.
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“I think it’s probably one of the best times in history to be born with a disability if you have resources…”
Yeah, I was thinking a bit earlier that if we’re comparing the disabled of today to the migrant farmworker’s disabled child of the 1880s or the slum seamstress’s disabled child, I think we may be sneaking in the assumption that the disabled child of today lives in a nice suburb, goes to a nice school and has two nice parents with graduate degrees. For a fair comparison, you have to compare the migrant farmworker’s disabled child in 1880 to the migrant farmworker’s disabled child in 2011. In that particular case, the similarities (the continual change of residence, the lack of continuity in care, the lack of support or connection to the surrounding community) may quite swamp the differences.
“It’s possible for one parent to be left essentially alone with a disabled child.”
More than possible.
Matt,
I’m a philosopher’s wife. I think you’re being way too categorical about some very, very controversial stuff. In some ways, you have the disagreement backwards. “Personhood” is really more the pro-choicer’s ground than the pro-lifer’s. The pro-life arguments that I am most familiar relate to biological humanness, rather than “personhood.” (The humanity of the human fetus is much safer ground as an argument for the pro-lifer. We don’t have big philosophical discussions of when elephantness or giraffeness or kangarooness begins–it’s something that begins more or less instantly as the DNA code begins to be executed, and becomes more and more pronounced during gestation. Google images of fetal elephants if you disagree.)
As has been noted many times, many of the standard definitions of “personhood” are so exacting that they exclude vast swathes of born humanity. If you doubt that, I will be happy to provide as many references as you like to the literature when my in-house philosopher becomes available.
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Amy, I too am a philosopher, and teach this stuff regularly. I’ll be teaching it next week, in fact. But your making a category mistake between human, in the sense of a type of animal (like elephant or giraffe) and “person” in the relevant sense. It’s true that some people argue that it’s “human” and not “person” that matters, but the reason for this is always unclear, except when it’s clearly theological (as it is in, say, the work of John Finnis or Robby George, despite their protestations.)
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What if there was a fat guy and trolley and a baby?
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The following is from my husband the philosopher:
1. Standard pro-choice accounts of personhood, like those of Mary Anne Warren, require intellectual attainments that human beings don’t have until around 1.5 years of age–self-concept, broad range of problem-solving abilities, non-topic-specific linguistic capacities, etc.–and some adults never develop them. There are philosophers who are willing to say that one-year-olds and the severely mentally retarded do not have the right to life, but very few non-academics are willing to go in that direction. It is a better fit with our moral intuitions to take the right to life to extend to those beings that are of such a kind as normally develops these intellectual attainments than it is to take the right to life to extend only to those beings that presently have these attainments.
2. It is pretty obvious that all of us are mammals, despite what some metaphysicians and pro-choice philosophers say, and it is uncontroversial that mammalian existence starts around fertilization or at least implantation. Thus abortion kills the very same entity as would be killed if instead the individual were killed at age 20, say, and the abortion deprives the entity of more life (namely about 20 years more life) than a killing at age 20 would.
3. It may be that, say, the Robert George and Patrick Lee work on abortion has an essentially theological ground, but it is not clearly an essentially theological ground.
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My husband also notes that there is a very large gap between the arguments and beliefs of pro-choice philosophers and the arguments of the pro-choice rank-and-file. Few rank-and-file pro-choicers would say that infants are not persons or that we are not mammals, whereas among pro-choice philosophers, such views are common.
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One of my husband’s old colleagues went even further with personhood. According to that colleague, personhood is not achieved until a human being can understand embedded conditionals (something like “she said, if x then y”). That (and similar formulae) is a very high bar for personhood, and there are many people walking around today who would flunk the philosophers’ personhood tests.
And that is why it is not trolling to bring up abortion in the context of quality of life for the disabled–if ever the people who make the personhood tests get the upper hand in our society, it’s going to be a very dark day for the disabled.
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There are non-personhood based arguments for the right to abortion. Matt will know these backwards and forwards, but for the benefit of the non-specialist reader, here are some of Judith Jarvis Thomson’s ingenious pro-choice examples (including the violinist example):
http://en.wikipedia.org/wiki/A_Defense_of_Abortion
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The modern world, in the United States, Europe, and a few developed countries, may be the best time and place for disabled people.
That ignores the rest of the world. For many disabled people, life hasn’t changed. Think of an albino child in Africa. http://gazettebw.com/index.php?option=com_content&view=article&id=11566:salif-keita-albinism-is-his-life-battle&catid=20:timeout
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I really think a great majority of disabled children would be better off if their parents didn’t insist on putting such huge limitations on them…
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